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Gwendoline Jakins

Home Members Gwendoline Jakins
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@gwendolinej

@kbettles Kathy, your message has been very helpful to us. My husband has been on mannitol for 18 months with no progression in the disease. But recently I thought that his PD mask was stronger and his voice seemed softer. So you have reinforced that for me, because I wasn’t sure. I wasn’t waiting around though, so I ordered the Inf […] View
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  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Hi Thomas,
    Sosa is the mannitol we have used all along, but the wholesaler here in Australia has been out of stock and may not bring it in again.

    So I thought that, although it did wonders for my husband, we might try another brand in the hope that he may get his sense of taste back, as a couple of PD people have. I have bought one lot off…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Hi again Kathy,
    I’ve remembered the supplier in the US that supplied the mannitol that restored a PD patient’s sense of taste. It was Bulk Supplements. They ran out of supplies, and that’s why he changed suppliers.

    The interesting thing is that this company gets supplies out of China, so it could be from your source. A member reported that…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Thank you Kathy, I will try your mannitol. I’ve heard this story before. A PD patient was using mannitol from a supplier in the US and bought it elsewhere when it was no longer available from that supplier. He then lost his sense of taste again.

    The discussion that evolved from this patient’s report mentioned the source of the mannitol,as in…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Beth, the research that was done in Israel suggested 1tbs.in coffee for normal weight. Our pharmacist checked the research before my husband started taking mannitol. He reported back that taking more was detrimental. You are not in the normal range weight wise, so I guess it’s a possibility that you are taking too much….just a thought.

    Gwendoline

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Oops, meant to say “my husband started on mannitol at the end of 2019”, not 2012.

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Mannitol, a sugar, has given me back my life! in the forum Parkinson's Disease Medications 11 months ago

    Hi John, our story is similar to yours. My husband’s most serious symptom from the very beginning was apathy (on or in his bed almost all day). Because of this he diagnosed with Lewy Body Dementia (2012). It was the Neupro patch that got him off the bed and he was then diagnosed with PD. All was well in that area until 2019, when the extreme…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins posted a new activity comment 11 months, 3 weeks ago

    Kathy, I also should have mentioned that my husbands voice has improved again. We have been using the coronet for a couple of weeks. I think the mask has improved as well.

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  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins posted an update 11 months, 3 weeks ago

    @kbettles Kathy, your message has been very helpful to us. My husband has been on mannitol for 18 months with no progression in the disease. But recently I thought that his PD mask was stronger and his voice seemed softer. So you have reinforced that for me, because I wasn’t sure. I wasn’t waiting around though, so I ordered the Infrared cor…[Read more]

    • Profile picture of Gwendoline Jakins
      Gwendoline Jakins replied 11 months, 3 weeks ago

      Kathy, I also should have mentioned that my husbands voice has improved again. We have been using the coronet for a couple of weeks. I think the mask has improved as well.

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Gut bacteria identified in UF study in the forum Parkinson’s Research News 11 months, 4 weeks ago

    Infrared light …we have bought my husband a infrared light coronet and I’m ordering a mat as well for the abdomen.  It’s been highly successful for some PD patients, both for motor and cognitive problems.

    In The Weekend Australian newspaper this weekend there’s a long article on the results of research done by the Australasian Research Institut…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins replied to the topic Is anyone on Xadago? in the forum Parkinson's Disease Medications 2 years, 5 months ago

    My husband has been on Xadago since  May.   And yes, my husband, who has severe apathy, was much improved.   He’d been on the Neupro Patch for 6 years and that was amazing as far as his apathy was concerned.. Like flicking a switch.  He was initially diagnosed withLBD (Lewy Body Dementia).  He was lying on the bed looking at the wall.  Lev…[Read more]

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins posted a new activity comment 2 years, 5 months ago

    Yes, you’re right, Xadago is available here as well. But they are doing a phase 4 trial to get feed back on its effects. I guess where the 10 patients comes in. Our neurologist will report back on its effects. He is very involved in research and very open minded. I will watch the B6. Thanks. Gwendoline

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    • Profile picture of Jean Mellano
      Jean Mellano replied 2 years, 5 months ago

      that is great you have a neuro who stays on top of things. plz do keep us informed as to xadago effects,

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins posted a new activity comment 2 years, 5 months ago

    My husband was on 8mg patch. Started on 4mg. Xadago is not readily available here. It’s being trialed (4th trial) in the US and elsewhere. Our neuro could give it to 10 patients. This trial is to get feedback that is not from a control group. My husband did improve on the Xadago, but still has some apathy, but at least he’d reading a…[Read more]

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    • Profile picture of Jean Mellano
      Jean Mellano replied 2 years, 5 months ago

      xadago was approved by FDA in 2017. B1 didnt work for me, i do take b12 and magnesium, beware too much b6 as it may effect efficacy of carbidopa/levodopa if your husband is taking that. i read john pepper’s book, he seemed to relate walking and selegeline as the thing that helped him most.

      • Profile picture of Gwendoline Jakins
        Gwendoline Jakins replied 2 years, 5 months ago

        Yes, you’re right, Xadago is available here as well. But they are doing a phase 4 trial to get feed back on its effects. I guess where the 10 patients comes in. Our neurologist will report back on its effects. He is very involved in research and very open minded. I will watch the B6. Thanks. Gwendoline

        • Profile picture of Jean Mellano
          Jean Mellano replied 2 years, 5 months ago

          that is great you have a neuro who stays on top of things. plz do keep us informed as to xadago effects,

  • Profile picture of Gwendoline Jakins

    Gwendoline Jakins became a registered member 2 years, 5 months ago

    • Profile picture of Jean Mellano
      Jean Mellano replied 2 years, 5 months ago

      hi gwendoline
      it seems as though australia is light years ahead of USA in terms of treating PD. i am on neupro, doesnt seem to be doing much for me..interesting you have access to xadago as it is not covered by medicare here and many insurance companies do not cover it. if they do, it is still cost prohibitive.

      we all react very differently to…[Read more]

      • Profile picture of Gwendoline Jakins
        Gwendoline Jakins replied 2 years, 5 months ago

        My husband was on 8mg patch. Started on 4mg. Xadago is not readily available here. It’s being trialed (4th trial) in the US and elsewhere. Our neuro could give it to 10 patients. This trial is to get feedback that is not from a control group. My husband did improve on the Xadago, but still has some apathy, but at least he’d reading a…[Read more]

        • Profile picture of Jean Mellano
          Jean Mellano replied 2 years, 5 months ago

          xadago was approved by FDA in 2017. B1 didnt work for me, i do take b12 and magnesium, beware too much b6 as it may effect efficacy of carbidopa/levodopa if your husband is taking that. i read john pepper’s book, he seemed to relate walking and selegeline as the thing that helped him most.

          • Profile picture of Gwendoline Jakins
            Gwendoline Jakins replied 2 years, 5 months ago

            Yes, you’re right, Xadago is available here as well. But they are doing a phase 4 trial to get feed back on its effects. I guess where the 10 patients comes in. Our neurologist will report back on its effects. He is very involved in research and very open minded. I will watch the B6. Thanks. Gwendoline

            • Profile picture of Jean Mellano
              Jean Mellano replied 2 years, 5 months ago

              that is great you have a neuro who stays on top of things. plz do keep us informed as to xadago effects,

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